Parents of children with cerebral palsy need more support

When I was a child, Chris* was the undisputed VIP in our little local Seventh Day Adventist church.

Those with cars took turns to pick Chris from home to take him to church, and he sat at the front pew in full view of the entire congregation. Whenever he missed church, the congregation expected an explanation.

Why was Chris so special? Chris was born with cerebral palsy. That in itself was not special, but how his mother raised him made all the difference.

She gave Chris a full life. She did not hide him at home as most mothers would, but chose to let him enjoy the world to the fullest. She loved Chris unconditionally and that rubbed off on all of us.

Chris was the firstborn and his siblings grew to accept him, care for him, love him and take pride in him.

Chris spent his 25 years on a wheelchair, wearing nappies (diapers were still unheard of in our part of the world) and never had a single pressure sore.

He would never weigh more than 20 kilogrammes, but he was well fed and mostly healthy, free from common ailments that distress most cerebral palsy babies.

Growing up amidst such love was reflected in Chris’ temperament. He loved dearly, his face lighting up with a big smile when his favourite people walked into the room.

NEVER LEARNT TO TALK

He never learnt to talk but those close to him understood him completely. He wore his heart on his sleeve and by exposing his vulnerability, we all learnt great lessons in unconditional love.

Like many of his counterparts, Chris struggled with muscle spasms and contractures, feeding difficulties, intellectual limitations, inability to control bladder and bowel movements, slowed growth and drooling, but he was spared from dealing with convulsions and respiratory complications. He may have lived for only a quarter of a century but it was a full life.

Raising a baby with cerebral palsy is no walk in the park. Early infancy is characterised by numerous hospital visits as a result of one complication or the other. These babies are also prone to needing critical care repeatedly, costing huge sums of money.

Those with severe gastro-intestinal system complications may require complicated interventions to support their nutrition such as gastrostomy feeding tubes that can be quite intimidating to the caregivers.

CARE VERY DEMANDING

The day to day care of these babies can be so demanding that it is virtually impossible to keep a regular nanny. Mothers are frustrated into quitting their jobs to care for their baby fulltime.

It therefore makes sense why all the frustration would drive parents to need to blame someone. For a long time, it was assumed that cerebral palsy was a result of neglected labour, with the unborn foetus suffering assault to the brain during labour from inadequate oxygen supply.

For this reason, healthcare workers have often been blamed for poor outcomes and borne the brunt of litigation. Cerebral palsy is one of the leading causes of medical litigation in the world, making the practice of obstetrics and midwifery quite dicey.

However, research is now proving that injury to the brain resulting in cerebral palsy seems to occur mostly in the ante-natal period as the baby is developing in the womb. This accounts for over 80 per cent of cerebral palsy cases.

This injury is a result of abnormal genes, intra-uterine infections, congenital malformations and multiple pregnancy (twins, triplets).

The remaining 20 per cent results from complications around birth such as birth asphyxia; and after delivery such as intracranial haemorrhage, complications of prematurity, trauma, infections and kernicterus. For a good number of cases, the cause remains obscure.

Despite massive advances in obstetric care, the so-called First World countries that have reliable documentation note that the incidence of cerebral palsy has still not gone down in the last 40 years.

STRENGTHEN CARE SYSTEMS

This means that as we continue to understand the condition, we must also make peace with the fact that there is a lot we may still not be able to control.

This means that we must strengthen the care systems. All babies with cerebral palsy must be able to access the best possible medical care available to minimise morbidity. This is one condition that we must root for to ensure the national hospital insurance fund covers for cost of care to relieve the families of financial agony.

Social support systems are necessary for these babies and their parents/caregivers. The Cerebral Palsy Society of Kenya is one such institution that must be applauded for the work they do.

In addition, hospital based counsellors must be made available by institutions caring for these little ones to provide timely, factual information to families.

As families taking care of these little ones, the burden is heavy, taking a physical, emotional and financial toll that cannot be quantified.

However, in the middle of it all, let us not forget to celebrate the little things that count. When Chris finally left us, he was mourned far and wide. It was amazing how many lives he had touched in his vulnerability.

As a mum or dad to a baby with cerebral palsy, find the ray of light in your little one and nurture it; it will tide you over during the tough times.

People around you will treat your little angel based on how you treat them yourself. Be a positive force and it will surely radiate to those around you to make your baby’s days count!

* Name changed to protect privacy.